Spanish Translation and Dissemination of EMPOWER Materials to Address Barriers to Pain Management at the End of Life.

Introduction: The Effective Management of Pain by Overcoming Worries to Enable Relief (EMPOWER) intervention is an evidence-supported approach for addressing barriers to pain management (e.g., patient/family concerns about addiction) at the end of life. Such barriers appear more pronounced among Spanish-speaking individuals. This study aimed to (1) translate EMPOWER materials into Spanish, (2) disseminate materials to hospices with ≥25% Hispanic patients, and (3) survey hospices about the use and usefulness of materials. Methods: We back translated EMPOWER materials with harmonization, then disseminated materials to 242 hospices. Thereafter, we used a semistructured survey to assess use and usefulness of EMPOWER materials using univariate statistics and content analysis. Results: Thirty-eight hospice representatives responded (participation rate = 15.7%). Respondents were primarily non-White (55.3%) and Hispanic (60.5%). Nealy half (47.4%) were nurses. A majority (81.6%) indicated they currently employ ≥1 full-time English-Spanish bilingual team member. Among those who reported receiving the EMPOWER materials (n = 29), 58.6% indicated they-or another staff member-used them with patients or families. Using a single-item rating (0 = not useful to 10 = very useful), respondents evaluated the English EMPOWER materials' usefulness as 7.6 (standard deviation [SD] = 1.4) and Spanish materials as 8.4 (SD = 1.4). Most (62.1%) indicated they would likely use EMPOWER materials in the future. Conclusion: Thematic findings suggest EMPOWER reinforces clinical education, promotes discussion about pain management, and helps address culturally specific barriers to care. EMPOWER appears to be a useful, easy to use, and promising intervention that can be implemented among both English- and Spanish-speaking populations.

Cancer Prevention and Diagnosis Knowledge among Spanish-speaking Older Latino/as Residing in Tampa, Florida.

Objective: Cancer remains the leading cause of death among Latino/as in the United States, and advancing age is a major risk factor for developing most cancer types. Given the growing population of Latino/as immigrants aged ≥60 years and the current lack of relevant data, this study aims to understand the cancer prevention and perception of cancer diagnosis among older Latinos to ensure that they receive effective prevention, intervention, and psychosocial care. Method: A survey exploring attitudes about cancer was developed and administered in Spanish. Using convenience sampling, 168 individuals identifying as Latino/as were surveyed in Tampa, Florida. Descriptive analysis was conducted to understand study population characteristics. Frequencies were assessed to understand the participants' responses to cancer-related attitude questions. The effects of age, country of origin, length of stay in the United States, and marital status on the participants' cancer-related attitudes were assessed using logistic regression. Results: The mean age of the study participants was 67.9 years, 34.5% were male, and the mean length of stay in the United States was 25.8 years. In total, 29% and 24.4% of the participants knew that breast cancer and prostate cancer, respectively, can be diagnosed early. Individuals with an elementary education were less likely to have sufficient knowledge of cancer prevention and diagnosis. Additionally, 93.5% of the population was aware that tobacco use can lead to cancer, and 84.5% knew that exposure to tobacco smoke can affect both the smoker and their family. Conclusion: Older Latino/as possess knowledge about cancer causes yet lack knowledge regarding cancer prevention and diagnosis, potentially creating barriers and causing them to avoid treatment. Focusing on cancer-related health education among older Latino/as is a step toward appropriate and equitable cancer care.

"They don't know who they have in here": Sense of community in budget hotels.

The purpose of this study was to understand older residents descriptions of socio-spatial guest interactions and sense of community in budget hotels. Due to financial vulnerability, some people move into budget hotels when other housing options are unavailable. Little is known about how older residents perceive other hotel guests who frequent the commercial establishment and how a mix of various consumer interactions can potentially influence health. Theoretically framing this inquiry with sense of community constructs, we conducted a secondary data analysis of 20 interviews with residents aged 50 and older. Through thematic analysis strategies, we identified temporal and socio-spatial interactions of hotel guests, then discussed sense of community based on these insider/outsider relationships. We conclude with research, policy, and practice implications of our findings.

Measuring Attitudes About End-of-Life Care: Evaluation of a Modified Version of the Hospice Philosophy Scale.

The Hospice Philosophy Scale (HPS) is the only scaled instrument that measures health professionals' attitudes about end-of-life care consistent with the hospice philosophy. This study tested the properties of a modified version of the HPS to provide preliminary validation data on internal consistency, convergent validity, and factorability in a broad population of adults. A cross-sectional telephone survey designed to assess the general population's attitudes regarding hospice use was administered. exploratory factor analysis elicited an eight-item instrument (HPS-8). The HPS-8 produced a Cronbach's alpha of .73 and demonstrated sufficient convergent validity, including positive associations with a scale measuring the importance of relevant end-of-life issues (r = .41, p < .001), a personal preference for hospice (ρ = .36, p < .001), and, among those who had experienced hospice care, satisfaction with hospice care (ρ = .28, p < .01). Our evidence suggests the HPS-8 is a reliable and valid instrument for use with a general adult population.

Exploring Motivational Interviewing to Engage Latinos in Advance Care Planning: A Community-Based Social Work Intervention.

Advance care planning (ACP) does not readily occur in medical settings and often gets missed. Older Latinos need ACP information to encourage advance directive (AD) completion indicating preferences for end-of-life (EOL) care. OBJECTIVE: To explore the experiences with counseling using motivational interviewing (MI) techniques and social workers to encourage ACP communication among older Latinos with advance chronic diseases. This study describes stages of readiness to plan for EOL care. DESIGN: We conducted a qualitative study with older Latinos who participated in a community-based intervention in Southern New Mexico. METHODS: Participants in the intervention were selected because they received ACP education plus counseling involving MI to address resistance to ACP. Motivational interviewing counseling involved the following: (1) engaging in structured dialogue about ACP, (2) using and completing AD documentation, (3) encouraging ACP communication with providers and families, and (4) applying AD information into actionable behavior. We utilized a constant comparative method and thematic analysis to explore the meaning of older Latinos' experiences with MI counseling and stages of change. RESULTS: Participants (n = 32) were mostly women (74.3%), half born in the United States and half from Mexico in the United States on average for 31.75 (standard deviation 16.22) years. Many had less than sixth grade education (31.3%) or had not completed high school (21.9%). Key themes indicate the following stages of change: (1) precontemplation, (2) contemplation, (3) preparation, (4) ACP action, and (5) maintenance. CONCLUSION: This study contributes to the literature by identifying areas for adaption to enhance understanding and increase information to ultimately achieve the completion of ACP among Latinos.

"People Give Opinions, but the Decision Belongs to the Patient": Examining Cancer Treatment Decisions Among Latinos/as in Central Florida.

Latinos/as, the fastest-growing ethnic group in the United States, experience high cancer rates. Factors contributing to treatment decisions among Latinos diagnosed with cancer must be studied. This paper aims to identify treatment decisions among Latinos with cancer and examine factors influencing these decisions. A qualitative exploratory study using semi-structured interviews of 60 Latino/as diagnosed with cancer was conducted. Close-ended responses were analyzed using percentages and frequency distributions, while open-ended responses were analyzed using open coding and thematic categorization. Surgery was the most commonly chosen treatment among participants because it was perceived as providing the highest chance of prolonging life. Only 57% of participants were provided with treatment options. Latinos/as typically prefer modest, paternalistic patient-physician relationships. Therefore, providing culturally appropriate information is valuable. This study underscores the need for health providers to present all available treatment options to enhance cancer treatment outcomes.

Implementing an Advance Care Planning Intervention in Community Settings with Older Latinos: A Feasibility Study.

BACKGROUND: Older Latinos with serious medical conditions such as cancer and other chronic diseases lack information about advance care planning (ACP). ACP Intervention (ACP-I Plan) was designed for informational and communication needs of older Latinos to improve communication and advance directives (ADs). OBJECTIVE: To determine the feasibility of implementing ACP-I Plan among seriously ill, older Latinos (≥50 years) in Southern New Mexico with one or more chronic diseases (e.g., cancer, heart disease, renal/liver failure, stroke, hypertension, diabetes, chronic obstructive pulmonary disease, and HIV/AIDS). DESIGN: We conducted a prospective, pretest/post-test, two-group, randomized, community-based pilot trial by using mixed data collection methods. SETTING/SUBJECTS: Older Latino/Hispanic participants were recruited from community-based settings in Southern New Mexico. METHODS: All participants received ACP education, whereas the intervention group added: (1) emotional support addressing psychological distress; and (2) systems navigation for resource access, all of which included interactive ACP treatment decisional support and involved motivational interview (MI) methods. Purposive sampling was guided by a sociocultural framework to recruit Latino participants from community-based settings in Southern New Mexico. Feasibility of sample recruitment, implementation, and retention was assessed by examining the following: recruitment strategies, trial enrollment, retention rates, duration of MI counseling, type of visit (home vs. telephone), and satisfaction with the program. RESULTS: We contacted 104 patients, enrolled 74 randomized to usual care 39 (UC) and treatment 35 (TX) groups. Six dropped out before the post-test survey, three from TX before the post-test survey because of sickness (n = 1) or could not be located (n = 2), and the same happened for UC. Completion rates were 91.4% UC and 92.3% TX groups. All participants were Latino/Hispanic, born in the United States (48%) or Mexico (51.4%) on average in the United States for 25 years; majority were female, 76.5%; 48.6% preferred Spanish; and 31.4% had less than sixth-grade education. Qualitative data indicate satisfaction with the ACP-I Plan intervention. CONCLUSIONS: Based on enrollment and intervention completion rates, time to completion tests, and feedback from qualitative post-study, follow-up interviews, the ACP-I Plan was demonstrated to be feasible and perceived as extremely helpful.

Exploring Health Care Providers' Views About Initiating End-of-Life Care Communication.

Numerous factors impede effective and timely end-of-life (EOL) care communication. These factors include delays in communication until patients are seriously ill and/or close to death. Gaps in patient-provider communication negatively affect advance care planning and limit referrals to palliative and hospice care. Confusion about the roles of various health care providers also limits communication, especially when providers do not coordinate care with other health care providers in various disciplines. Although providers receive education regarding EOL communication and care coordination, little is known about the roles of all health care providers, including nonphysician support staff working with physicians to discuss the possibility of dying and help patients prepare for death. This study explores the perspectives of physicians, nurses, social workers, and chaplains on engaging seriously ill patients and families in EOL care communication. Qualitative data were from 79 (medical and nonmedical) providers practicing at 2 medical centers in Central Los Angeles. Three themes that describe providers' perceptions of their roles and responsibility in talking with seriously ill patients emerged: (1) providers' roles for engaging in EOL discussions, (2) responsibility of physicians for initiating and leading discussions, and (3) need for team co-management patient care. Providers highlighted the importance of beginning discussions early by having physicians lead them, specifically due to their medical training and need to clarify medical information regarding patients' prognosis. Although physicians are a vital part of leading EOL communication, and are at the center of communication of medical information, an interdisciplinary approach that involves nurses, social workers, and chaplains could significantly improve patient care.

"I Told Myself to Stay Positive" Perceptions of Coping Among Latinos With a Cancer Diagnosis Living in the United States.

PURPOSE: This study contributes to the sparse body of literature examining perceptions of coping among Latino men and women with a cancer diagnosis living in the United States. There are currently 50 million Latinos in the United States and, by 2050, projected to grow to 128 million. Although some research indicates that Latinos have unique sociocultural beliefs that influence their cancer care, very little is known about their perceptions of coping after being diagnosed with cancer. We examined Latino men and women's perceptions of coping to understand the meaning of their experience with cancer Method: Using criterion sampling technique, 60 immigrant and migrant Latino men and women diagnosed with cancer within the past 5 years were recruited from community-based organizations, clinics, and churches. The study consisted of 60- to 90-minute semistructured interviews asking open-ended questions pertaining to coping. The qualitative design facilitated an understanding of coping within the participants' social and cultural contexts. RESULTS: Median age of the participants was 55 years. Among the women, 80% had breast cancer; 12% had ovarian cancer; and 8% had throat, thyroid, stomach, or skin cancers. Among the men, 94% had prostate cancer and 6% had brain, colorectal, or lung cancers. Emerging themes associated with the development of coping strategies involved positive reframing, family support, religion and spirituality, and support from health care providers. The term "positive reframing" relates to finding meaning and positive emotions that help sustain the coping process, despite having a cancer diagnosis. In addition, when medical and helping professionals provided tangible support, participants engaged in meaning-based coping. CONCLUSION: This study provides insights regarding the existing coping strategies which Latinos utilize and provides clinician-tangible information pertaining to participant's engagement in meaning-based coping. Family support facilitated coping among the Latino men and women. The role of religion and spirituality in the lives of the participants enabled them to cope with the cancer diagnosis. Future research is necessary to examine coping strategies regarding specific cancers at end of life.

Quality of death among hospice decedents: Proxy observations from a survey of community-dwelling adults in the contiguous United States.

This study examines hospice service experience and quality of death. A survey of 123 community-dwelling adults in the United States found that physical comfort, pain-free, and spiritual peace were more important to respondents reporting a personal experience with hospice. A "good death" was associated with older patients who died at home, and respondent satisfaction with hospice service. A "good death" was mapped as 29 nodes and 79 links using semantic network analysis. Three subjects (patient, family, hospice), three timeframes (end-of-life, moment of dying, death), and four central causes (home, peaceful, pain-free, and expected) were identified.

Willingness to Use Pain Medication to Treat Pain.

OBJECTIVE: Despite the growth of the economic impact of pain and pain management, there remains a lack of knowledge about disparities, especially, evidence regarding individual attitudes and beliefs about accepting pain treatments. This study provides preliminary information on the prevalence of public concerns about pain management and a better understanding of factors that may ultimately lead to improved pain management and treatment adherence. METHODS: Using a cross-sectional survey of community-dwelling adults 18+ in the US, 123 randomly selected respondents were telephone-interviewed in 2012. Principal components factor analysis (PCA) was used to detect statistical groupings of attitudes and beliefs about pain and pain management. The modified Protection Motivation Theory was applied to examine the willingness to use pain medicine. RESULTS: The five most important components pertained to threat appraisal, coping appraisal, attitudes, subjective norms, and perceived control. Threat appraisal was the most common factor, and subjective norms was the least common factor. Lower income, more awareness of hospice, and less misconceptions about threat appraisal and attitudes toward pain and pain management were associated with more willingness to use pain medicine in hierarchical regression. CONCLUSIONS: These components are useful for future research on the willingness to use pain medicine and may have implications for assessing cognitive barriers toward pain and pain management among the general public.

Knowledge About Hospice: Exploring Misconceptions, Attitudes, and Preferences for Care.

CONTEXT: Poor knowledge and misperceptions about hospice are believed to be common, but there is scant evidence about the public's understanding of hospice. OBJECTIVES: To examine hospice knowledge among geographically diverse adults; and describe linkages between knowledge, attitudes and beliefs about hospice care, and demographics. METHODS: A small cross-sectional telephone survey of adults living in the contiguous US was conducted using randomly selected numbers (cell phone and landline) and over-sampling of minorities. Measures assessed knowledge (23-item test), attitudes (8-item scale), experiences and preferences related to hospice. RESULTS: 123 participants completed surveys (response rate 46%). 106 (86%) had heard about hospice, 65 (54%) of whom had a personal experience with hospice. Participants had an average hospice knowledge test score of 18 (SD = 3.4) indicating moderate knowledge of hospice. A majority of respondents (62%) did not know that hospice cannot provide concurrent cure-oriented care. Misperceptions about eligibility, coverage of hospice, the provision of hospice in nursing homes or to persons who live alone were not uncommon (missed by >20%). Greater knowledge of hospice was associated with more favorable attitudes about the hospice philosophy of care (r = .22, p = .023) and a greater preference for hospice (p = .049). Respondents who were more educated, worked in the medical field, were non-Hispanic White, and had direct experience with hospice were also more likely to be more knowledgeable about hospice. CONCLUSION: Despite relatively high hospice awareness and favorability, myths and misperceptions about hospice still abound--and may drive ethnic disparities in end-of-life care. Educational interventions and future study are needed.

Assessing Challenges in End-of-Life Conversations With Patients Utilizing a Public Safety-Net Health Care System.

Multiple factors influence end-of-life (EOL) care discussions that occur in health care systems, within organizations, among individuals working within these systems and in patients and family/friend support networks. This study examined barriers to EOL care discussions as experienced by health care providers working in a public safety-net health care system where the majority of their patients were low-income and immigrant Latinos seeking medical treatment. Qualitative data were collected in South Central Los Angeles through semistructured interviews with 46 health care providers from different disciplines in medicine, nursing, social work, and chaplaincy. The themes indicated communication barriers in the public sector health care setting and sociocultural patient- and family-level factors. All providers made valuable contributions to clarify the complexity of the problems. Universal strategies are needed to improve communication.

Knowledge About Hospice Care and Beliefs About Pain Management: Exploring Differences Between Hispanics and Non-Hispanics.

CONTEXT: Among Hispanics, incomplete knowledge about hospice care may explain low rates of utilization and culturally-specific beliefs about pain and pain treatments may contribute to disparities in pain management. OBJECTIVES: To compare (1) knowledge and attitudes regarding hospice, (2) and beliefs about pain and pain medication between Hispanics and non-Hispanics. METHODS: A cross-sectional phone-based survey of adults living in the contiguous United States was conducted using randomly selected phone numbers with over-sampling for diversity. Measures assessed knowledge (a 23-item test), attitudes (an 8-item scale), experiences, preferences related to hospice and beliefs regarding pain and pain management. RESULTS: 123 individuals participated in the survey, 13% of whom were Hispanic. Hispanics were less likely to have heard of hospice are (p <. 001) and, among those who had, more likely to have inaccurate information about it (p = .05). Specifically, Hispanics were more likely to report that only individuals over age 65 are eligible for hospice services, which is incorrect (44% vs. 93% of non-Hispanics; p=.001). Only 67% of Hispanics knew that hospice helps family members as well as the dying person. More Hispanics (43%) than non-Hispanics (9.3%) reported that admitting pain is a sign of weakness (p < .001). A greater proportion of Hispanic respondents agreed that a good patient does not talk about pain (p = .07): 38% vs. 18% from non-Hispanics. CONCLUSION: Despite the increasing knowledge of hospice care among Hispanics, specific information about the scope of services remains limited. Cultural beliefs about pain management, along with inadequate knowledge of the role of pain management at end of life, persist.

Certified nursing assistants' perspectives of nursing home residents' pain experience: communication patterns, cultural context, and the role of empathy.

This study explored the following issues related to pain management among nursing home (NH) residents: 1) communication patterns between NH residents and certified nursing assistants (CNAs) about pain; 2) how race and ethnicity influence NH residents' pain experiences; and 3) CNAs' personal experiences with pain that may affect their empathy toward the resident's pain experience. The study consisted of a convenience sample of four focus groups (n = 28) from a NH in central Florida. A content analysis approach was used. Data were analyzed with the use of Atlas.ti version 6.2. The content analysis identified four main themes: 1) attitudes as barriers to communication about resident pain care; 2) cultural, religious, and gender influences of resident pain care by CNAs; 3) the role of empathy in CNAs care of residents with pain; and 4) worker strategies to detect pain. Attitudes among CNAs about resident cognitive status and perceived resident burden need to be recognized as barriers to the detection and reporting of pain by CNAs and should be addressed. In addition, NHs should consider a person-centered approach to pain that is culturally competent given the cultural influences of both residents and staff. Finally, educational programs for CNAs that include empathy-inducing scenarios could potentially improve the care provided by CNAs when dealing with residents' pain.

Psychosocial concerns among Latinas with life-limiting advanced cancers.

Research has demonstrated that limited dialogue in end-of-life (EOL) care can negatively impact decision-making and place of death. Furthermore, when vulnerable populations are faced with EOL cancer care, they experience issues resulting from previous gaps in services attributed to sociocultural and economic issues that influence EOL care. These conditions place an additional burden on disadvantaged populations which can cause distress, especially as disparate conditions continue to persist. Little is known about Latinos' psychosocial concerns that lead to distress in EOL care. The objective of this study is to explore Latinas' experiences with life-limiting cancer conditions to identify the EOL care concerns that impact their dying experience. This study used a phenomenological approach to explore the EOL care concerns of 24 Latinas receiving treatment for metastatic cancers in a public sector healthcare system in Los Angeles, California. In-depth interviews were recorded and transcribed, and qualitative analysis was performed using Atlas.ti software.

Examining cultural factors that influence treatment decisions: a pilot study of Latino men with cancer.

The objective of this study was to explore beliefs and treatment decisions of foreign-born Latino men from Cuba, Mexico, Colombia, and Venezuela, who have been diagnosed with cancer and who live in Central Florida, USA. Experiences related to knowledge of diagnosis, treatment decisions, communication with health providers, family involvement, and advance care planning (ACP) discussions following the diagnosis of cancer are central to this study. This study used qualitative in-depth semi-structured interviews and thematic analysis. The interviews were conducted with 15 Latino men who have been diagnosed with cancer within the past 5 years and who reside in the community. The interviews were conducted and transcribed in Spanish and then translated into English. The median age was 55.4 years. Nine Latino men had prostate cancer, two had brain cancer, two had colorectal cancer, and two had lung cancer. Emerging themes involved the suddenness of the diagnosis, fear of dying, expectations of diagnosis-related communication, reliance on physicians for treatment decisions, limited information pertaining to ACP, family support, and role changes. Latino men's limited knowledge of cancer diagnosis and treatment options coupled with their fear led them to immediately believe that they were going to die. Knowledge gaps regarding diagnosis-related communication, treatment decisions, and ACP varied among the men. The forthright diagnosis communication and the expectation to engage in decision making are contrary to Latinos men's beliefs of reliance on health providers decisions. The findings contribute to understanding Latino men's beliefs about a cancer diagnosis and treatment decisions.

Advocacy at the end of life: meeting the needs of vulnerable Latino patients.

This research explores health care professionals' understanding of the problems that arise in managing a terminal condition impacting the Latino population and conceptualizes the components of patient advocacy that address gaps in end-of-life care for patients and their family members. Limited research exists regarding patient advocacy from the perspectives of health care providers working with vulnerable Latino populations utilizing a public sector health care system. Forty-six semi-structured interviews were conducted with providers from different disciplines including medicine, nursing, social work, and chaplaincy. Although roles and responsibilities vary among health providers, it is imperative that all providers become aware of the need for patient advocacy. Doing so is not only in the best interest of vulnerable Latino populations but also has overarching financial benefits and positive outcomes for patients, administrators, and public health care systems. Social workers are the ideal professionals to assume leadership roles and share their knowledge of how to advocate effectively for the most vulnerable populations.

Caregiving for older Latinos at end of life: perspectives from paid and family (unpaid) caregivers.

This study examined the various settings in which caregiving occurred for terminally ill older Latinos. Qualitative data were collected in Central Florida through in-depth, semi-structured, open-ended interviews. 20 Latinos caring for terminally ill Latinos participated in the study. N = 9 Latino family (unpaid) caregivers provided care in the terminally ill person's home, while N = 4 provided care to a family member in the caregiver's home. N = 4 paid caregivers provided care to terminally ill Latinos who reside in the caregiver's private home and N = 3 in an assisted-living facility. The themes indicate that family (unpaid) caregivers experienced changes in their financial status; they both encountered English language barriers. Geographical distance made caregiving more challenging. Paid caregivers adapted to cultural expectations and their higher income enabled them to hire assistance.

Advance care planning among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis.

PURPOSE: Limited knowledge exists pertaining to advance care planning (ACP) among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis living in Central Florida, in the USA. The purpose of the study is to identify factors that facilitated the completion of ACP and decisions making patterns among the three groups of Latinas. METHODS: The research method used was an exploratory qualitative in-depth open-ended semi-structured interview with a grounded theoretical approach and thematic analysis. The interviews were conducted in Spanish with a purposeful sample of 45 Latinas (15 in each group) diagnosed with cancer. RESULTS: A total of ten women (22 %) in the study documented at least one form of ACP. Thirty-five women identified obstacles to accessing information regarding ACP, relating this to insurance and financial factors. Among the Colombian women, one completed a living will, health care surrogate, and power of attorney (all forms of ACP), and three just a living will. Two Puerto Rican women completed all, two a living will, and one both a living will and an enduring power of attorney. Only one Mexican woman completed a living will. CONCLUSIONS: This study identifies a knowledge gap regarding ACP among Latina women with cancer diagnosis living in Central Florida, in the USA. Differences between the three groups exist as a result of migration/immigration history, family support, education, English language proficiency, income, knowledge gaps, and information ascertained by medical and health professionals. These differences contribute to their readiness, receptiveness, and willingness to engage in documenting a living will, a health care surrogate, and an enduring power of attorney for health decisions.